Failings in Mental Health Care for Adults With Autism

One key problem repeatedly encountered with both psychiatrists and psychologists is the failure to adequately monitor clinical progress of patients with autism according to any objective standard.
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This past September in a New York Times op-ed, the eminent neuroscientist Eric Kandel expressed his optimistic views, based on recent research advances, regarding the future of psychiatry. The scientific progress envisioned by Dr. Kandel may help to improve therapy and ameliorate some of the deficiencies in psychiatric diagnosis, which currently rest primarily on observed behaviors and not on underlying cellular or molecular meachanisms -- a situation not really improved by the widely discussed, and widely criticized, fifth edition of the Diagnostic and Statistical Mannual (DSM-V) of the American Psychiatric Association released earlier this year. Even advances of the scope predicted by Dr. Kandel are not likely to eliminate other fundamental problems afflicting psychiatry and clinical psychology as they are now actually practiced by mainstream professionals. Patients with autism are one group for whom the deficiencies in current psychiatric and psychological treatment are particularly evident.

One key problem repeatedly encountered with both psychiatrists and psychologists is the failure to adequately monitor clinical progress of patients with autism according to any objective standard. Often intertwined with this deficiency is the unwillingness to think critically about possible alternative approaches or, in the absence of significant improvement, to consider referral to other practitioners with more or different expertise. Too frequently, only approaches that are convenient and routine for the practitioner are or employed or even considered.

In one instance, I directly asked a doctor if she knew of anyone, even someone in another city, who might know of potentially more successful treatment methods. The doctor's response was reducible to the word, "No." In retrospect, this response suggests either that this well-regarded physician had inadequate knowledge of her field or that she was being disingenuous.

Many professionals representing themselves as competent to treat autism are in fact unqualified to do so, their formal credentials notwithstanding. Such practitioners are cryptic charlatans. While they may use "accepted" approaches, they provide care that, like therapies offered by classical quacks, has minimal probability of providing significant benefit. (Non-standard treatments for autism, many of which are highly problematic and sometimes even dangerous, require separate treatment.)

For example, anyone with insight into autism would recognize that seeing some patients once a week or every other week for one hour or less is not a plausible avenue to effective therapy when the goal includes significant behavioral change. In addition, for certain patients the reliance on conversation alone, despite the well-known limitations of this treatment modality in the context of autism, wastes time, effort, and financial resources that could be better directed elsewhere. Individuals who think in very concrete terms and have limited ability to grasp abstract concepts generally lack the sort of self-insight necessary to modify their behaviors merely from discussing past or future scenarios with a therapist.

Pharmacological therapy is based almost entirely on a highly inefficient and sometimes costly trial-and-error approach and may be influenced by pressure from pharmaceutical sales representatives. Furthermore, psychiatrists or their equivalents pay insufficient attention to drug-associated side effects. Concern is especially lacking for drug-associated symptoms regarded by practitioners as relatively minor because they are not directly life threatening or do not necessitate hospitalization. Even side effects regarded as clinically insignificant by professionals, such as alterations in temperature regulation, induction of mild dizziness, increased anxiety, or intensified aggression can have major consequences for patients and their relatives in terms of family dynamics, risk of physical injury, or tremendously damaging entanglements with the legal system that engender complications and further crises in a viciously negative positive feedback loop.

To take one of many possible examples, a physician prescribed aripiprazole (marketed as Abilify) for a young adult patient I know. Almost immediately after beginning therapy, the patient complained of severe and incapacitating leg pain. At the insistence of the patient's parents, the drug was discontinued. Some months later the physician thought it appropriate to again try aripiprazole. As before, severe leg pain occurred.

The patient's sibling found a case report online that described an extremely similar scenario. Again the parents insisted that the aripiprazole be discontinued, sent the case report to the physician, and emphasized the likelihood that the leg pain was a side effect of aripiprazole. Although the physician discontinued the medication, he did not appear to be convinced by the evidence presented that aripiprazole was the cause of the leg pain. Two other young adults in the same locale with similar diagnoses and behavior profiles also experienced similar undesirable symptoms associated with taking arpiprazole.

Beyond the problems with outpatient care, most hospital emergency departments and in-patient psychiatric wards are poorly suited to help patients with autism in any substantial or long-term sense. Transporting agitated individuals to emergency rooms typically generates medical bills in the thousands of dollars without providing substantial or lasting benefit to the patients or their families, and sometimes such encounters make matters worse. Some police departments automatically transport agitated individuals to hospital emergency rooms without recognizing the profound limitations of these facilities or of their own policies.

Unfortunately, many of the governmental, legal, and social systems that interact those affected by autism base their policies and practices on the false notion that most professionals and hospitals are competent to provide care for these individuals. It is long past time to acknowledge that the evidence routinely contradicts this assumption.

Finally, if leaders of the organizations representing psychiatrists or psychologists respond by assertinging that "most practitioners" are competent and professional and do not exhibit the deficiencies I have claimed, it is fair to note that such claims will likely lack any substantiation. In any case, the wishful thinking of such spokesmen does not trump direct observations by parents and other caretakers of individuals with autism. While my criticisms presumably do not apply to all practitioners or necessarily to the treatment of individuals with other conditions (although some applicability seems likely from what others have reported), I emphatically reject the rotten fruit theory, e.g., the notion that the problems highlighted above are rare and due to the failings of a few "bad apples." While there are professionals who can help individuals with autism, they are probably in the minority, and the problems with care delineated here are both pervasive and consequential.

Neil Greenspan is an immunologist and clinical pathologist in Cleveland and a member of the board of directors of the Think Computer Foundation, which supports social and recreational activities for adolescents and adults with developmental disabilities.

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